Cancer fight gains TRACTion

A newly established Scottish charity is offering support for patients suffering from cancer of the aerodigestive tract (head and neck, oesophagus, stomach).

Its founders, Emma Shanks and Liz Grant, were previously active in the Ben Walton Trust, which is being wound up. They will carry on with part of the work established by Mike Walton (see ‘Trust to go, but work continues’, below), while covering other areas.

The new charity aims to maintain strong links with the dental profession to continue raising awareness of head and neck cancers. Emma is well placed to give a unique perspective on the impacts of the disease. Not only is she a cancer researcher at the Cancer Research UK Beatson Institute in Glasgow, she has also developed oral cancer on no fewer than four occasions (see ‘Emma’s Story’, below).

She explained: “Mike and I had a discussion about what would happen after the Ben Walton Trust was wound up. I didn’t want to see all the good things Mike had done disappear. Having been a patient, I loved the fact that the trust was spreading the message that young people do get oral cancer.

“It’s vital to make dental and medical students aware of the signs and symptoms of the disease so that early diagnosis can be made. As part of my activity with the Ben Walton Trust, I have given talks from a young cancer patient perspective to other cancer patients and medical and dental students.”

Emma outlined the objectives of TRACTion Cancer Support. They are to:

Engage patients in an excellent quality of life during and after treatment for cancer of the aerodigestive tract (ADT)

Establish a patient-focused community, offering support and guidance through all aspects of treatment, with a strong emphasis on post-treatment recovery

Raise awareness of the signs and symptoms of ADT cancer in all age groups

Offer research funding to better understand and meet the needs of patients, principally in collaboration with the Royal College of Physicians and Surgeons, Glasgow.

One of the initiatives pioneered by the Ben Walton Trust that TRACTion Cancer Support will take forward and develop is the Dinner with a Difference soft food cookbook.

Emma added: “That has been a real success and we want to maximise its use and disseminate it as widely as possible. It’s an excellent resource not only for oral cancer patients but also for those who have suffered oesophageal or stomach cancer, and other illnesses as well.

“People who have been affected by ADT cancer can often feel alienated from the social aspects of mealtime, and can disengage from an interest in food generally, which then has an impact on their nutrition. But the Dinner with a Difference event, which prompted the creation of the cookbook, saw patients re-engage with the act of sharing a meal and the impact was profound.”

Emma and Liz are joined by another trustee in the charity – Dundee-based Dr Gareth Inman, who like Emma, is involved in cancer research.

It is relatively early days for TRACTion. Its official launch will take place on
15 September. But the charity is already active, with social media platforms now active and a website under development.

“Our launch will be at the Hilton in Glasgow,” said Emma. “It is open to everyone, but we will personally invite patients who wouldn’t normally be able to come to these types of event.

“It will be at lunchtime and we will offer samples of food prepared from the cookbook.”

She added: “Our intention to create a patient-focused community is very important. When you are diagnosed with cancer, it’s very scary and intimidating: your treatment plan is described to you, but you don’t know what the long-term consequences will be. Having contact with someone who has been through that and come out the other side is a huge benefit.
I know that from personal experience. One of the goals for TRACTion is to make arranging such interactions simpler and easier.”

Trust to go, but work continuesThe charity has achieved a great deal over the years (see Scottish Dental November 2015). However, Mike has decided it is an ideal time to pass the baton to other hands. He does so with the trust having made its mark in several ways. Among other things, it has:

Set up, with the late Richard Horner, the Scottish Oral Cancer Action Group, and delivered a presentation to the Scottish Parliament

Submitted a proposal to SIGN and Mike worked as a patient representative on the guidelines on head and neck cancers

Worked with dental students on increasing awareness by holding annual events where students speak to other students about risk factors

Supported and developed with BMJ Learning the online module, “Mouth cancer: recognising it and referring early”

Organised and funded the Dinner with a Difference and the resulting soft food cookbook.

It is the final of these achievements that is being built on by TRACTion Cancer Support. “We have provided a donation to help them take things on,” said Mike. “One of our funders had embraced the idea of the cookbook and wanted part of the money they’d raised to go towards reprinting the book when necessary.

“Emma comes at things from a different perspective and we thought that was a good thing to continue. Because she has been a sufferer of oral cancer, it makes things very real for the people she delivers talks to. I wish her and Liz every success.”

Royal CollegeThe trust will continue to keep a website presence for the next three years to act as a source of information and links to other sites, such as BMJ Learning. A sum of money has been set aside to allow an update of the BMJ Learning module.

Meantime, there is an agreement to distribute remaining funds with the Royal College of Physicians and Surgeons of Glasgow. “They will open an account named ‘The Ben Walton Oral Cancer Fund’,” said Mike.

“In alternate years this will be used to award prizes and support projects and host an invited lecture. Donations will still be accepted into that fund.”

Mike added that it has been difficult to give up his work with the charity. However, he believes the efforts to tackle the disease and its effects will benefit from new energy.

“I’m happy that I’ve done my bit. We’ve had tremendous support from a huge range of people. Many of the dental practices we have dealt with realise what a genuine and dreadful disease oral cancer is.

“Now, there are many dentists, medics and students who have the problems in their sights and will bring new energy and drive to increasing awareness of the signs and symptoms and the need for rapid detection and treatment of mouth cancers. I wish them success.”

Emma tells her storyI was 24 and studying molecular biology when I noticed an ulcer on the side of my tongue. It was still there a few months later and wasn’t healing – in fact it started to hurt all the time.

A little later I moved to Dundee to start my PhD in molecular biology. I registered with a dentist and things changed. The dentist was aware of the signs and symptoms of oral cancer and referred me to the dental hospital.

Biopsies were taken from the area around the ulcer. The results showed I had oral cancer.

I felt numb when they told me, but because it had been caught early the outlook was good. I had surgery to remove about a third of my tongue.

Seven years later I noticed some white spots on my tongue. My cancer had come back. It was a massive blow. By this time I was with David – he was an immense support. I had more surgery to remove more of my tongue and it was a success.

Life carried on for the next two years and we had our first child, Jamie.

Then, the cancer came backThis time round, Jamie was a whole new reason to survive. I had a third surgery. It was extremely tough, but I got through it.

A year later, I was enjoying working as a cancer researcher and had given birth to my second child, Isobel.

Two weeks after that, the bubble burst again. I was diagnosed with oral cancer for a fourth time.

This time the treatment was more complex and even more painful. I had an eight-hour operation to remove a large section of my tongue, which was then replaced with a graft from my forearm. I needed a tube in my neck so I could breathe and another tube to eat.

This time was the hardest, and not just because of the treatmentI couldn’t see my son Jamie the whole time I was in hospital – it would have been too hard for him to see me like that. Thankfully, I did see Isobel since she was too young to fully understand what was happening.

I wanted to spend more time with my family. I had to get better for them, and for myself.

My parents were amazing each time I was diagnosed, but particularly the fourth time. They were an invaluable support.

When I left the hospital after my reconstruction operation – my fifth in total – I was so emotional.

It felt like I’d been released from jail. I’m grateful that I can enjoy the simple things in life now, like seeing Jamie and Isobel feed the animals on our farm.

It’s amazing what doctors can do and how far we’ve come in treating cancer. And despite how hard my treatment was, I feel lucky to be alive.

I’ve been told there is a less than 3 per cent chance of the cancer returning, so I’m hopeful I’ve beaten the disease. I may have had cancer four times, but it won’t define me.

Having cancer makes my work even more meaningful and I’m even more motivated to find better, smarter ways of treating cancer now.

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